Live. Love. Life: A Daughter's Tribute to Her Mother's Fight Against Brain Disease

Northwestern Medicine
Neurosciences October 25, 2013
One of the best lessons my mother taught me was to “smile and no one will know you are scared.” That is a lesson her mother taught her and that’s how she lived her life, with a smile on her face and a positive attitude always. My mother, Barbara Monzures, was a renaissance woman who had a family late in life and focused on her career. She rose to the rank of Major in the Air Force and was a registered nurse. In 2008, my mother was diagnosed with Corticobasal degeneration*, a rare degenerative brain disease that affects only about 3,000 people in the U.S.

Mother Barbara with her daughter laying on a pillowThis progressive neurological disorder took my tenacious, energetic role model and imprisoned her in her own body. Cognitively she knew exactly what was happening but over time she lost all mobility. She lost her voice. She lost her independence. I became her advocate trying to ease her pain and find a reason for this disease. We saw neurologists at a multitude of hospitals and any independent neurologist who understood this insidious disease assured me my mom was “not just getting old.” My mom kept her self-respect while living with this awful illness and quietly suffered through it all. There are no drugs specific to the disease and there is no cure. She lost her battle with Corticobasal degeneration on October 6, 2013, and, as promised, donated her brain to the Northwestern Ken & Ruth Davee Department of Neurology.

I find solace in knowing that her brain is still working toward a cure and her spirit lives in eternity. With her permission, I started my own Charity Foundation in 2010, Live. Love. Life (L3). an Illinois non profit corporation 501c3. The mission of Live. Love. Life. is to create awareness and support for a variety of brain issues that affect Chicago families in need through community engagement with consumers, family, friends and others who care about giving back. Live. Love. Life. is a celebration of the journey we are all on, how we strive to do our best and pass on the goodness in our hearts. We celebrate the meaning of life and the core spirit that goes beyond our physical bodies. That spirit is the love we share, the love that bonds us together and the love in our lives. L3 is a celebration of people coming together for a greater good.

This year’s annual fashionable fundraising fete takes place on Saturday, November 2, 2013 at the Museum of Broadcast Communications. The funds raised that evening will be donated to the Northwestern Memorial Foundation for a research project being done on degenerative brain diseases at the Northwestern University Feinberg School of Medicine. The project is being led by Dr. Jane Wu. You can help support the cause and watch fashion, music and entertainment collide on the runway while experiencing Live. Love. Life.’s annual gala. For sponsorship and ticket information, visit the website*. Any neurological disorder is devastating to the person who lives with it and their family -- that is why I am an advocate for neurological disorder research and brain donation. Even though my mother’s fight is over, her fighting spirit lives on in me to help others who are diagnosed with a degenerative brain disease.

At the end, my mother lost all mobility. She could not speak or swallow. Even her beautiful smile was no longer visible. The one she put on so bravely through it all and the one that greeted me every time we were together. I will miss that smile. I will miss her laughter. I will miss her infinite wisdom. She taught us how one can live with dignity and grace when faced with a life changing diagnosis. We can honor her spirit, and others like her, by fighting for a cure.

Jane Monzures is the host of Living Healthy Chicago on WGN-TV and CLTV. She is also currently the co-host of the legendary 97.9 The Loop morning show in Chicago, she is the founder of the Live Love Life Foundation, and writes about her three favorite things on her popular blog, ShoesGuysFood.com*
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